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Multiple Sclerosis: Making the Most of Doctor Visits

Be your best advocate and don't be bashful — your doctor needs to know everything about you and your multiple sclerosis to be able to help.

For the most effective multiple sclerosis treatment, you need to find and work with a doctor you both like and trust. Most people are diagnosed with multiple sclerosis in their early twenties, and since you’re likely to have a normal life expectancy, you’ll probably spend a great deal of your life in your doctor’s care. That’s why so it’s important to develop a good relationship, says Nancy L. Sicotte, MD, director of the Multiple Sclerosis Program at Cedars-Sinai Medical Center in Los Angeles.

Ideally, you want to find a neurologist who specializes in multiple sclerosis. These specialists will be up-to-date on the latest studies and be familiar with all of the multiple sclerosis treatment options available to you. “Most people find that they have more success when they see a neurologist who’s treated many people with multiple sclerosis,” says Rosalind Kalb, PhD, a clinical psychologist and director of the Professional Resource Center at the National Multiple Sclerosis Society.

However, depending on where you live, you could find it challenging to locate a multiple sclerosis specialist. “There are a fair number of neurologists, but not many who really focus on multiple sclerosis,” Dr. Sicotte says.

Ways to Find a Multiple Sclerosis Specialist

Start by asking your primary care doctor or insurance company to help you locate a multiple sclerosis specialist. You can also search on the Web sites of the American Academy of Neurology and the National Multiple Sclerosis Society.

If you can’t find a specialist convenient to where you live, locate a general neurologist who can help you manage your disease day-to-day and whom you can see regularly. Then, visit the nearest MS specialist once a year. “I have people with multiple sclerosis who come see me once a year and say, ‘Here are the medications I’m on, and here’s how I’m doing,’ and we do an annual checkup,” Sicotte says.

Because MS is such a complex disease, the National Mmultiple Sclerosis Society highly recommends that you work with doctors who take a comprehensive interdisciplinary approach. “You can get that from an MS center [also called a multiple sclerosis comprehensive care center or clinic]," Dr. Kalb says. "But if you aren’t near an MS center, work with a doctor who’s connected to other specialists in your community so if you need a urologist or a mental health professional, your doctor can recommend someone for you to see.”

If you're interested in exploring alternative therapies to treat your multiple sclerosis symptoms, you'll want a doctor who’s open to them as well.

How to Prep for a Doctor’s Visits

Your homework doesn’t stop once you find a doctor you want to work with. You’ll get the most out of your care if you prepare for your office visits, says Benjamin Segal, MD, who directs the Multiple Sclerosis Center and the Holtom-Garrett Program in Neuroimmunology at the University of Michigan Health System in Ann Arbor. “The history of your symptoms is an important part of your diagnosis and care," Dr. Segal says. "It’s a good idea if you bring a list of your symptoms, a detailed timeline of when they occurred, and how long they lasted to your appointments.”

At the Doctor’s Office

Here’s how to get the most out of the office time you have with your doctor:

Write everything down. Make a list of not only your multiple sclerosis symptoms and disease history, but also any questions or concerns you may have. Once you’re in the doctor’s office, it’s easy to get distracted and forget what it was you needed to ask. If it’s a long list, prioritize it, Kalb advises. If your time with your doctor is limited, be sure to get your most important questions answered. Write down the answers, too, so you won’t forget any details.

Don’t be bashful. Many of your concerns may feel embarrassing to you, including topics such as sexual dysfunction and loss of bladder control. But you shouldn’t be afraid to bring up these issues. “We’ve heard it all before, and we want to know about any types of symptoms a person is experiencing that may reflect on his or her MS activity," Dr. Segal says. He says he usually brings up these topics because he knows some people may be reluctant to do so on their own. And when he does, people usually open up.

Kalb adds that people sometimes are also reluctant to tell their doctor if they're feeling sad or frustrated by their multiple sclerosis or if they're experiencing memory issues. But it’s very important not to ignore mood or cognitive issues because they can progress and become serious. Tell your doctor how you’re feeling emotionally. He or she may recommend a mental health professional to help.

Know your insurance coverage. Know what your insurance plan will and won’t cover before you see your doctor so you’re not surprised by a huge bill. Most plans pay more for doctors who are in network — check that yours is, if that matters to you. Remember that policies and coverages can change at any time. “Currently, there are nine medications used to treat multiple sclerosis, but whether they’re covered or not may enter into the decision about which one to take,” Kalb says. However, she says, if your insurance turns you down for some reason, you don’t have to just take no for an answer. “The National Multiple Sclerosis Society has insurance specialists who can work with you — it may be a matter of being more assertive," she says. And if your insurance ultimately won’t cover what you need, consult a specialist at the National Multiple Sclerosis Society who can help you explore alternatives and ways to get assistance.

Bring a loved one with you. Ask a friend or family member to accompany you to your doctor’s appointments — someone who you trust and who can listen and help you remember what was said during your visit. Another option is to take notes. Also, ask your doctor for any printed handouts and where you might get reliable information about the suggested medications or treatments.

The bottom line is to be proactive, Sicotte says. If you have an issue you feel your doctor isn’t addressing, say something. Your doctor shouldn’t mind if you remind him or her that it’s time to have a certain medical test or if you feel your issues aren’t being addressed. Your needs can change over time, and treatments are evolving rapidly — all the more reason to communicate well with your doctor, Sicotte stresses.

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